The Growing Clout Of Online Patient Groups

[Guest guest]

http://online.wsj.com/article/SB118168968368633094.html?mod=googlenews_wsj

The Growing Clout Of Online Patient Groups

THE INFORMED PATIENT

By LAURA LANDRO

When researchers at Harvard University were looking for a gene mutation in a

group of rare blood cancers, they turned to Joyce Niblack, who put the word

out to an online patient mailing list she manages, spurring more than 300

members to send in mouth swabs and bone-marrow samples.

Later, Ms. Niblack mustered 1,179 participants from 30 countries for a Mayo

Clinic-led study of how the cancers, known as myeloproliferative disorders,

affect quality of life. The Mayo researchers are now running the

clinical-trials page on her foundation's Web site, mpdinfo.org, to keep

participants up to date on developments.

Online patient groups have become an increasingly powerful force for

health-care consumers over the past decade, raising funds for research and

offering patient information and support. Now, as the cumulative power of

their memberships grows, these groups are becoming invaluable partners to

researchers and physicians searching for cures.

Patient groups are stepping up their participation in medical and

public-health research and entering far-reaching collaborative efforts with

researchers, scientists and drug developers. They are raising funds and

taking part in studies to evaluate the impact of online patient sites. They

are even conducting their own studies on side effects of medications, and

working with researchers to recruit clinical-trial participants, provide DNA

samples and start tissue banks.

In the case of Ms. Niblack's efforts, the results of collaboration are

already apparent. The DNA gathered from the group's mouth swabs and

bone-marrow samples helped researchers identify a genetic mutation that

could be a target for new therapies. The finding could lead to new drugs or

other substances that attack specific cancer cells without harming normal

cells.

" Groups like those led by Joyce immensely serve the needs of patients, " says

Ayalew Tefferi, a Mayo physician and researcher who works with the group.

Her foundation's Web site is " one-stop shopping for clinical trials and

breaking news in research. "

Other online groups are having a similar impact. An online group for

patients with a rare cancer known as leiomyosarcoma sent more than 300

tissue samples to researchers at Stanford University for a tissue bank that

is being used to study genetic and molecular changes that occur in the

disease.

The International Myeloma Foundation conducted an online survey of patients

that helped identify jaw bone deformities in some patients taking the

Novartis drug Zometa, which is used to reduce or delay bone damage that may

occur with the disease. Novartis now advises patients to avoid invasive

dental procedures while taking Zometa.

Spreading the Word

To spur more widespread collaboration, a group of experts in patients' use

of the Web just launched a new Web site and blog, e-patients.net, originally

developed by Tom Ferguson, a physician who received funding from the

Wood Foundation and the Pew Charitable Trusts. Following Dr.

Ferguson's death last year after his own 15-year battle with multiple

myeloma, his cohorts completed his study, " e-Patients: how they can help us

heal health care, " which is available free on the site.

Co-authors of the blog include Hoch, a neurologist at Massachusetts

General Hospital, and nah Fox, a researcher at Pew's Internet and

American Life Project.

Another member of the team, Gilles Frydman, founder of the Association of

Cancer Online Resources, recently launched a patient-focused " wiki " -- a

collaborative Web site that visitors can add to and edit -- called

lo-wiki.acor.org. The site helps consumers build and maintain online

discussion groups and aid researchers who want to study such online

communities or use the online groups to conduct research. Mr. Frydman, who

started ACOR more than a decade ago when his wife was diagnosed with breast

cancer, is also developing other sites, including one that will provide

links to medical research papers for patients.

ACOR, which offers access to 159 mailing lists for cancer and other

disorders, including the one managed by Ms. Niblack, had about 110,000

cancer patients and caregivers using the online communities over the past

year, according to Mr. Frydman. But there are tens of thousands of such

groups on sites such as ; last year, about 17 million adults, or 12% of

Internet users surveyed by Pew, participated in an online discussion or

group forum that helps people with personal issues or health problems.

Reaching Patients

" We can bring information about studies, clinical trials and meetings to any

patient world-wide who has computer access, " says Ms. Niblack, a retired

patent attorney who runs both an ACOR mailing site and the MPD Foundation

and has been fighting the disease for almost 20 years. " People have told me

the information has saved their lives. "

The University of North Carolina at Chapel Hill teamed up with ACOR for the

first large-scale scientific analysis of medical online communities,

publishing its findings last month in the Journal of Medical Internet

Research. Using software that analyzes message content to examine the type

of support provided by the groups, the researchers found that the most

common topics in messages were about treatment information and how to

communicate with health-care providers.

" One of the real values in the mailing lists is their role in getting

patients to seek second opinions and ask questions about clinical trials, "

says Barbara Rimer, dean of North Carolina's School of Public Health and an

author of the study.

Patients' Main Concerns

The software programs enabled researchers to study messages without

identifying who wrote them. But Deborah Bell, an ovarian-cancer survivor who

manages the ovarian-cancer list for ACOR and participated in the North

Carolina study, says members of the group are already aware that what they

are writing is on a public forum, and privacy is not a major issue. With a

potentially deadly cancer diagnosis, she notes, their main concern is

finding information and coping with doctors who say snide things like " and

where did you go to medical school? " when confronted with questions from a

patient.

Raising New Issues

Of course, the rush to link communities and researchers and the move by

patient groups to conduct their own research raises some thorny new issues.

While the nonprofit, patient-run online groups have no financial interest in

research or recruiting for trials, some for-profit health Web sites see

their online communities as a way to make money. Such sites, supported by

drug-company advertising, may seek to recruit patients for drug-company

clinical trials, often without going through physicians who may advise

patients about the pros and cons of such trials.

Also, the research organized by online patient communities makes some

scientists nervous because such efforts don't use the gold standard of

randomized controlled clinical trials.

The Life Raft Group, an organization of patients suffering from rare

gastrointestinal tumors known as GIST, conducts its own surveys about the

side effects of the Novartis drug Gleevec, commonly used to treat GIST. The

group recruits participants from among its members and publishes results on

its liferaftgroup.org Web site. Norman Scherzer, a retired public-health

official who started the group when his wife was diagnosed with GIST, notes

that the study turned up different reactions among men and women to the

drug, and was the first to report that side effects decrease over time.

" At minimum it is a surveillance system, " says Mr. Scherzer, who says the

group isn't trying to pass off its research as pure science. Mr. Scherzer

recently persuaded Novartis CEO Dan Vasella to give the group $2 million for

a research program that will recruit experts from major cancer institutions

to work together to study patients who become resistant to Gleevec.

Working Together

Demetri, head of sarcoma and bone-cancer research at Dana Farber

Cancer Institute in Boston, who treats GIST patients and has worked closely

with the Life Rraft Group, says that doctors need to work in partnership

with patient groups. Doctors should take the self-administered surveys

seriously, to understand the impact of side effects, for example.

But in cancer research, he cautions, " the challenge is keeping the patient

voice in, but also staying as rigorous as possible and not being swayed by

inaccurate, premature or misleading data. "

Corrections & Amplifications:

The CMPD Education Foundation, for myeloproliferative disorders, is run by

Joyce Niblack at mpdinfo.org. Yesterday's Informed Patient column

incorrectly referred to it as the MPD Foundation, which is a separate and

unrelated research organization for the diseases.

Zavie (age 69)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem